Monday, February 7, 2011

The Agony of Waiting

Daphne’s surgery was scheduled for Thursday, February 3, at 1:00 p.m. I slept at the hospital on Wednesday night, because I couldn’t bear to leave Daphne alone before her big day. We spent Thursday morning curled up in a rocking chair, snuggling and comforting each other. In the early hours, I felt calm and confident, but as the day progressed, my stomach gradually tightened, my heart began to race, and my right arm started to twitch. One o’clock came and went, and our nurse Regina still hadn’t heard from the operating room (OR). My anxiety increased with each passing minute. I worried about the moment of separation, and I worried that the surgery would be postponed. Both seemed like terrible destinies.

Around 2:00 p.m., we received word from the OR. Regina placed Daphne in a portable incubator, and we wheeled her through a maze of corridors to another building in the hospital complex. We stopped in the middle of a distant hallway outside a set of double doors. Fortunately, they didn’t whisk Daphne away as I expected. We waited in the hallway for about 15 minutes, and I was allowed to touch her through a porthole in the incubator. I ran my hand over her soft, curly hair, touched her itty-bitty hands, and gave her (and myself) a little pep talk. I didn’t cry, but my heart ached.

Eventually, the anesthesiologist joined us in the hallway to outline her role in the surgery. She explained the risks of anesthesia, as required, but assured me that Daphne would be under constant supervision and that she would be in good hands. I had to trust her, otherwise, how could I put my daughter in her hands?

After that, I expected them to wheel Daphne through the double doors and down the hall while I watched, but instead a nurse guided me away, leading me to a waiting room. I suppose that was the easier of the two scenarios. It was difficult for me to leave Daphne, but as least it was voluntary and she wasn’t ripped from my arms.

I planned to be alone during the surgery, but my mother, feeling helpless in Utah, called the mission home here in Birmingham, Alabama, and asked the mission president if he could send someone to sit with me. He sent two senior sister missionaries, Sister Sommerfeldt and Sister Dunbar, to keep me company. What an incredible blessing! These sweet sisters brought the love of the Lord with them and provided the perfect distraction to keep me from fretting and pacing while Daphne was in surgery. Within minutes of their arrival, we were talking like old friends. After I shared my story, we discussed their families, the gospel, the missionary work in Alabama, and our impressions of the Birmingham area. Talking was therapeutic and comforting. It kept me sane and gave me courage. Isn’t it incredible that as members of the Church we belong to a worldwide family, where we can always find comfort and refuge, no matter how far we are from home? What an amazing gift from a wise and loving Heavenly Father!

When Daphne’s surgeon, Dr. Kirklin, met with me, he told me that, if everything went as expected, the procedure would take about three hours: one for the anesthesia to take effect and two to insert the BT shunt. When I checked my watch at 5:45 p.m., Daphne and I had been apart for almost 3.5 hours, and I assumed I would be hearing from Dr. Kirklin very soon. I wasn’t worried, because I knew that even minor delays would add up. At 6:00 p.m., the waiting-room receptionist checked the operation log and saw that the start time for Daphne’s surgery was listed as 5:00 p.m., which made absolutely no sense, so he suggested we call the OR for an update.

As the OR nurse spoke, my heart sank. He explained that, because Daphne was so small, the anesthesiologist had trouble accessing her veins. It took 2.5 hours to sedate her, so Dr. Kirklin didn’t start operating until 5:00 p.m. The nurse assured me that things were going well and that Dr. Kirklin didn’t seem concerned. Despite that, I felt distraught. I had thought we were nearing the finish line, but really, we were only halfway through the procedure. I cried for a bit and reported to Will and our parents. Eventually, I regained composure and resumed my vigil with Sister Sommerfeldt and Sister Dunbar.

At about 8:00 p.m., a nurse called my name and directed me and my guests into a smaller, more comfortable waiting room, where we waited for Dr. Kirklin to give his post-op report. At that point, I knew Daphne was out of surgery, and I felt a surge of adrenaline flow through my body. I felt relieved, elated, apprehensive, and grateful to my Heavenly Father. She was safe, and I would see her very soon—although, honestly, those last minutes were some of the hardest to endure.

After 20 minutes, Dr. Kirklin stopped by to let me know that the procedure had gone smoothly. He explained the delay with the anesthesia and also noted the miniature size of Daphne’s subclavian artery (the part of the aorta where he attached the BT shunt). During surgery, he took Daphne off Prostaglandin, the medicine keeping her ductus arteriosus from disappearing, and put her on Heparin, a blood thinner to prevent blood from clotting in her shunt. He said that the ductus arteriosus would disappear within 24 hours, and then we would find out if the surgery worked. That was terrifying news, because it meant Daphne’s safety net would be gone for good. For a moment, I panicked. After the surgeon left, I said goodbye to Sister Sommerfeldt and Sister Dunbar, and a nurse led me into the CICU (Cardiothoracic ICU).

I’ve always been a bit squeamish, so I felt apprehensive about seeing Daphne after surgery. I had been warned that she would be extremely swollen and hooked to a number of new tubes and monitors, including a ventilator, and I knew she would have a fairly large incision in her left torso. I worried that her condition would overwhelm me, and that fear made me feel like a terrible mother.

But I needn’t have worried. When I saw her, I was filled with relief and joy. She looked so beautiful and so much stronger than I expected. Her face and extremities were very swollen—especially her little lips, which bulged around the adhesive holding her ventilator in place. The skin on her forehead was dry and flaky from a monitor that had been used to track the oxygen levels in her brain during surgery. A thin tube attached to a syringe had been threaded through her nose and down to her intestine to help release excess air. She was receiving Heparin through the PICC line in her left arm but wasn’t on any pain medication yet. She had two new IVs (one in her neck and one in her right arm), plus a central line in her right wrist to monitor her blood pressure. The incision in her left side started below her armpit and curved up toward her shoulder blade. Just below that was a chest tube allowing excess fluid to drain.

I stood at Daphne’s bedside, running my fingertips across her skin and through her hair. She was still heavily sedated, but every now and then, her eyes flickered open, which I found reassuring. I stayed with Daphne until 10:00 p.m., when I finally became so exhausted that I feared I would collapse right there; then I returned to the Ronald McDonald House, where I slept soundly for the first time in over a week. Getting through surgery was just one small hurdle, but passing it felt like a major success, and I was at peace.

2 comments:

Oh Rachel I'm so relieved everything went well. I'm so sorry for the awful length of your wait during her surgery. I don't know if you know much about my son but I can very easily say I have an idea of what you are going through. My heart aches with you as you endure this. But I know for a fact that these surgeries are so much harder on mommy than they ever are on baby. They heal and bounce back so quickly. You are all in our families prayers. I am so excited for you both to get to come home. We're sending our love your way until we can give it here in person.

Such a beautiful story, and I'm so glad everything went well. Your mom must have been very in tune to call the mission home. That part brought me to tears (as if I don't already tear up every time I check your blog!)

Daphne Jane Gainer

A Brief, Beautiful Life

Daphne Jane Gainer was born on January 20, 2011, in Birmingham, Alabama. She was adopted one week later by Will and Rachel Gainer, residents of Salt Lake City, Utah.

Hours after birth, Daphne was diagnosed with a congenital heart defect (CHD) known as pulmonary atresia, which prevents blood from returning to the lungs to receive fresh oxygen and results in a severely underdeveloped right ventricle.

Living with just half a heart, Daphne spent all but three days of her life either in the hospital or on supplemental oxygen. She endured three extended hospital stays, two heart surgeries, one heart catheterization, and countless needle pricks, blood draws, and other tests.

Daphne passed away on March 18, 2011, just hours after undergoing her second heart surgery. Her life on earth lasted just 58 days, but it was both miraculous and inspiring.

This blog is maintained by Daphne's mother, Rachel Gainer. It celebrates Daphne's life, explores the realities of grief, and affirms that death is not the end and families can be together forever.